A piece of the puzzle

I saw Doctor Hartnick yesterday, along with another lady from Mass General in the pediatric pulmonology and speech/language department. There were some interesting findings.

Now I forget the lady's exact name but I think it was Cheryl Hersh (later checked that's correct) and she did a nasality test, which checks how much air escapes the nose when one talks. This gets into the interesting part of things now. So what happened is she hooked me up to this helmet like object with a metal plate that divides the mouth and nose, on each side of the plate were microphones. She had me say some words and simple passages and the data was collected on a computer. After she had analyzed the data she told my mum and I what it meant. There was a line in the middle of the graph that collected the data, which was where it divided the sounds that were meant to come out of the mouth, when I spoke some of the sounds went above that line which means that there is air escaping my nose when I speak. But the only sounds in the English language that should come out the nose are M, N, and, Ing, though when I said "Bababababa." That would show nasality, air coming out of the nose. The next thing that she did was take a dentists mirror and look at my throat and uvula, as I have an elongated one. Then warmed a mirrored spoon up against my nose, well just under is a more accurate statement, and told me to talk. When I spoke the mirror fogged up a bit, we could see the air escaping. So she concluded I have yet another disorder-

- Velopharyngeal Insufficiency (VPI)

Now what does this mean? Essentially it means I have a small gap or cleft between the back of my throat and my pallete, causing me to 1. Not generate enough pressure to blow my nose, 2. Cause air to escape when I speak, this impacting my speech and resonance, and 3. A whole bunch of other stuff we have no idea what's going on. Like I said in the title, it's a piece of the puzzle. A very large and extremely complex and baffling puzzle.

So she emailed the data to Doctor Hartnick and we went to see him. This provided more evidence as well. As he did another laryngoscope, the fourty second one to be exact, yes I have in fact been keeping track for three years. And he noticed that when I spoke or said "babababababa." There were bubbles where the gap in my pallete was because it wasn't closing. A normal person would not have bubbles. So there are three options that we have.

1. Speech and Language therepy directed at this with Cheryl Hersh or Cathy Balif, my SPL at MEEI who I see for the stridor and hearing things. We are going to try this first.

2. An injectable substance to "build up"  the back of my throat and maybe help it close, though he said that this can wear off eventually. This would be done under anesthetic.

And finally,

3. Reconstruction surgery to build up the throat and pallete muscles. Likely using either extra muscle from another part of the body or tissue, something like that. This is the last step.

I know it's not very fun but at least we are very very very slowly figuring things out. Piece by piece.

Also as for that cyst in my sinus yeah insurance won't cover it until I'm 18 because insurance isn't nice.

Until next time,
Max